Dance with me

Tag: Advocacy

There’s a recurring pattern that can be seen in countless organisations and government committees that have a focus on autism. Being autistic myself I’m fairly adept at recognising patterns, but this is one I wish I didn’t keep seeing. Read more ›

Too many parents of autistic children look at actually-autistic advocates and dismiss us. “Not like my child.” Maybe not on the surface, not today, but we were all children once. And you don’t know what we experienced growing up.

That’s the point, you see. If you’re not autistic you can’t put yourself in the place of someone who is. Empathy doesn’t work with people whose brains behave in different ways. Who experience the world so differently from you.

We who are autistic know this. How could we not? It’s been our daily experience throughout our whole lives. We understand your child because so many autistic experiences are relatable to us all.

What you see in us, the ones who step up and try to educate you about autism, is the culmination of years of practice and learning. Years of experience of simply existing as autistic in a neurotypical world. We weren’t born fully-formed as advocates. We have taken on that role because we feel a kinship with other autistic people. We know how it feels to grow up autistic. We remember the things that would have made our lives better and we try to provide them for those who are growing up autistic today.

We’re not in it for ourselves. And we’re not here for you so much as for your child. Our aim is not necessarily to make your life easier (although that can be a welcome side-effect). No, we share our hard-won experience and insight so that your child can have a better life through being better understood and accepted.

So when you as a parent see advice from actually-autistic people, instead of thinking that your child could never hope to achieve what you see in us and dismissing what we say, start believing that the potential exists inside them.

Because when you stop thinking of your child as a tragedy, as lost opportunities, as damaged, and start thinking of them as a whole person, complete, you will lift them to greater things than you imagined when you first heard that diagnosis.

Autism is not a curse, it is not a blessing. It simply is. We’re different but we’re all human beings with similar feelings, hopes, fears, dreams and desires. As autistic people we don’t get as many opportunities in life. You can help change that, you can help us gain acceptance. You can help us achieve our full potential.

We advocate. We do what we can so that the experiences and challenges of being autistic are explained and can be more widely recognised and understood. The rest is up to you. If you want your child to be understood and accepted, that starts with you. Please don’t let us down. Don’t let your child down.

Because these people with their bigotry try to use this idealised free speech to claim they have a right to push their messages of intolerance. They don’t. They most certainly don’t. If they are given a platform they use it to incite hatred that leads to violence against their targets. They are bullies, trying to recruit and stir up other bullies. Trying to build a cycle of hatred and violence. They are evil.

Hate speech must always be denied a platform. It must be quashed. It’s imperative to come down hard and fast to stop it spreading. Giving a platform to hate speech says that it is acceptable. Allowing it is the same as accepting and condoning it. If you’re not against it, you’re complicit in the attacks.

I saw something ugly last night. Something disturbing. Something that unfortunately happens far too often. But last night it happened to my dear friend Emma Dalmayne. So that makes this personal.

There was an unambiguous incident of anti-autistic hate speech in a Autism Facebook group. Emma quite rightly tried to stop it: she was the one that got slapped down by the Admins. Yes, the group Admins ganged up on her and bullied her into leaving the group. They protected the perpetrator of the hate speech.

That’s so very wrong. That’s saying that hate speech is acceptable, but opposing it isn’t. What the hell kind of example is that to be setting? These people call themselves allies to the autistic community? Yeah, well don’t do me any favours! I’ll do without that kind of “support”, thank you very much.

I know what support is. I know what allies are. And I know who my friends are. There’s a lot of hate out there, a lot of people who would attack us simply for being autistic. Who would deny us our rights. Who are actively engaged in trying to harm us, even eradicate us. Who see us as a disease. “An epidemic”, “a plague” is how they refer to us.

I’m wondering why
They don’t value young lives.
Citations get written
Cos you just don’t fit in
To society’s round hole
You wind up on parole
Through no fault of your own
Your disabled “behavior” —
I’ll give you a flavor:

Kicking a trash can,
School called the lawman,
Up in front of the big man
For expressing your feeling,
The marked cards he’s dealing:
It’s your life they’re stealing.

Your life they’ll shatter
They don’t think you matter
They don’t really know you
They just try to show you
It’s they who are strong
So you must be wrong.

You’re eleven years old
Gotta do what you’re told,
Your life’s bought and sold,
The authorities are cold.
Their response was so drastic,
Charged with being autistic:
So these guys are tellin’ me
Your expression’s a felony?!!

Ignorant and lazy,
These guys drive me crazy;
They don’t care enough
To learn about this stuff,
And providing support
Just isn’t import-
ant to them.

So,

We’re rounding up friends
To make sure this all ends,
The state must make amends,
That school gotta learn,
Their ways gotta turn,
From the bad to the good.
Accept that they should
Support all their kids,
Not just shut the lids
Of the boxes they use
To excuse their abuse
By assigning some label
To say you ain’t able.

I’m proud and I’m not ashamed of it. Pride attracts a lot of negative responses: it’s named as one of the seven mortal sins in the Christian faith and it’s all too often conflated with egoism and hubris. I will argue that feeling pride is a good thing, a positive response to positive actions and circumstances.

To begin we need to define what pride is, and the first part of that will be to remove any confusion by identifying what it is not. Pride is not the excessive, self-absorbed arrogance of hubris. It is not the over-estimation of one’s own abilities, nor is it the egoistic self-congratulation of the narcissist.

Pride is a recognition of one’s own worth, that deep satisfaction which results from a job well done, an uplifting feeling of self-esteem. Pride is the natural step beyond simple self-acceptance: once you have learned to accept yourself as you are then it follows that you may begin to like yourself, to derive pleasure from aspects of your identity. I put it to you that being proud of who you are, of what you have achieved and what you may be capable of, is an act of love: to love yourself is to feel pride in yourself.

Pride is entirely a positive emotion. It arises when you feel good about yourself, when you feel worthy. It is empowering. In many ways pride is opposite to embarrassment; where embarrassment is the acknowledgment of failure, pride comes from success. Being proud is a celebration.

So when I say I am proud to be autistic, proud to be a trans woman, proud to be Lancastrian and proud to be married to Anne it is an indication of the high value I place on these things and the degree to which they form part of my identity. My pride is my internal celebration of them, my recognition that they shape me and make me the person I am. My pride gives me self-belief and the strength to deny any who would put me down. They cannot belittle me because I know who and what I am and where I come from: I know I’m worth something.

The story so far: this open letter on a friend’s blog calmly and rationally asked a number of the chefs from TV’s Iron Chef and Chopped to consider alternatives to Autism Speaks (AS) when supporting autism charities and autistic people. It sets out the well-publicized issues with AS’s repeated negative portrayals of autism and autistic people as tragic, broken and a burden on the rest of society. Portrayals that strongly suggest the lives of autistic children are defined by suffering; that carry the unspoken presumption that it would have been better if autistic people like me and many of my friends had never been born.

Please take the time to read Cristiana’s letter. It was written in response to her autistic son’s reaction to discovering that chef Michael Symon was to donate $50,000 to AS. She pleads from the heart as well as the head for autism organizations such as ASAN and AWN to receive the recognition they deserve. Let me be clear: she is not demanding that anybody cease their support for AS just on her say-so. Rather, she sets out the evidence to support her case, and asks that the reader makes an informed decision based on that.I’m posting this to signal boost because she could use all the support she can get in this. If you agree, please add your voice to hers and show that we are not just a few isolated individuals but an active community.

My goal with this blog is to offend everyone in the world at least once with my words… so no one has a reason to have a heightened sense of themselves. We are all ignorant, we are all found wanting, we are all bad people sometimes.